Thursday, 5 November 2015

To the woman who started at me

I saw you stare at me as I was walking down the slight hill of one of the streets into town.  You were walking beside me and you stared at my hip and the way that I was walking.  Yes I know I walk little differently to you and I walk with a limp.  As you gazed at me you saw me trying to balance myself along the footpath using my arms trying to keep my balance, my arms help me to stabilise my balance so I don't fall over or trip up and hurt myself.  It isn't easy to keep my balance on uneven  surfaces because I need to concentrate to make that I look ahead for any objects that I need to carefully pass around.

I know that you were just being curious about the way that I walk and how I walk.  I wanted to turn around and say take a picture it may last longer but I didn't because I am not that kind of person.  My feet are my transport they get me to places around town even the YMCA where I work teaching 2,3,4 year olds that everyone is different in the world and they don't stare at me because I am someone they look up to and admire.

The reason why I walk like I do I have mild hip dysplasia which means my hips weren't formed properly which is caused by my syndrome Cri Du Chat or Cry of the Cat or 5P-.  My legs might seem weak to you on the outside but they are strong on the inside.  There is nothing that anyone can do to fix my hips because if they did I would lose the ability to walk and I don't want that because I would lose my freedom and independence because my family would have to drive me around town all of the time.

So next time if you see me walk pass please don't stare just give me a little smile and say hi.  I might even say hi back.

Friday, 9 May 2014

My Quotes

We might view the world a little differently to most people.  We aren’t broken so we don’t need to be fixed.  We achieve things in our time and in our own special way.  We might think differently to everyone else but in our parents eyes we are perfect just the way we are.  All CDC people rock!!! Xox

If you wiped out people with disabilities there wouldn’t be any colour in the world any more only black and white and we need to have colour in the world in order to show each other love and compassion and understanding for one another.

Most people see the outer beauty of someone not the inter beauty that they hold.  I see both inter and outer beauty when I look at my CDC brothers and sisters.

My CDC brothers and sisters and I are superheroes in our own right.  We may not fight against crime or super villains but we fight every single day to do simple tasks which most people take for granted like walking, talking and expressing ourselves the way in which we want to.  To me my CDC brothers and sisters are superheroes.

I know that I am rare and unique in my own way and today we celebrate that by showing support by wearing Jeans for those people who have rare syndromes and diseases.  For a lot of families who have children with CDC and other disabilities it is a chance to show off their unique children to the world and for the world to see how beautiful and precious their children are to everyone in their lives.

I love all my CDC brothers and sisters equally,  I don’t have any favourite brothers or sisters because to me they are special in their very unique way and it doesn’t matter to me whether they can talk, walk or run because I love them all with my heart.

I am a voice for those who can’t speak for themselves.  I am a beacon full of hope and a promise to CDC families.  I am loyal, trustworthy, hardworking, respected in the CDC community and I am beautiful inside and out.  I am everything that I have dreamed of becoming and so much more.  I have touched so many people’s hearts and lives.  I am accepted as being me into a wonderful family!!! Xox

I know what my purpose in life is and that is to teach the world about Cri Du Chat and help and find parents who need that extra support and guidance.  Once they have me in their lives I am not going anywhere and I am there for them and they aren’t alone anymore. I love helping new families connect with families that they might haven’t known that has existed before.

I am an inspiration to a lot of people.  I write my quotes from my heart which is filled with love, joy, honesty, loyal, truthfulness and a willing to help others in time of their greatest need.  Once families with CDC children become friends with me, you are a friend for life and I am your child’s voice for them, I will cheer on your child from the sidelines, wish them a happy birthday on their birthday because everyone needs a little bit of happiness on their birthday from their big CDC sister.  I will be there one step at a time as you need me.

If you look past the Cri Du Chat label you would see people with different abilities doing ordinary  things that our doctors said that we couldn’t achieve like walking, talking, playing with our siblings and friends, laughing, living our lives to the fullest of our abilities. We can achieve impossible things if we dream vast and the world won’t see us being invisible but we will be visible for the world to sit up and take notice of what is happening when we accomplish something amazing and wonderful.

I am an angel in disguise who is missing 13.1 on my 5P arm which is roughly about 80% in some of my cells.  I don’t wear a halo or wings to spread my message across I just need people to open up their hearts and love which makes the world go round.  I will fight for my CDC brothers and sisters any day of the week, I am a voice that will be heard and I will make a difference in their lives for them to have a better tomorrow.  I know my strengths and weaknesses which makes me a well respected member of the Cri Du Chat community. 

All children are exceptional but there are some children who are very unique because they have rare genetic syndromes and they will develop at their own pace with love and support, they can and will make a difference in someone’s life and they will let their personalities shine throughout the world.
Don’t take the small things in your life for granted because there are people who have Cri Du Chat who achieve the small things every day in their life.  It maybe a small achievement that you think is unimportant but to them it is enormous.  They could have been working on their milestone or achievement for years with the help of their families or their therapists to achieve something that is worth celebrating.  

I am grateful for my friends and family in my life and I am also grateful for not having the full syndrome of Cri Du Chat and that I am a mosaic so I can help spread the word about Cri Du Chat that we coexist within our communities, cities, towns and countries all over the world.  I am also grateful for my Cri Du Chat family who support me to be me and having me as a positive influence in their lives.  I am also grateful for expressing myself through words and beautiful quotes that I write. 
I am one of the Cri Du Chat community greatest heroes.  A lot of people look up to me because I am responsible, a leader, dependable and an inspirational woman.  When I look at myself in a mirror I see a hard working, intelligent, Kiwi girl who is committed to helping and working alongside new families who are alone and afraid of the diagnose Cri Du Chat to help them understand and to see their child’s potential through a tunnel of light, hope and a lot of love.

I think I know why I was given the gift of being a mosaic as my superpower because I can teach the world what it is like having Cri Du Chat and help educate the public what Cri Du Chat is all about.  My superpower comes from my heart because I love helping new families understand what Cri Du Chat is all about.  I love the tv show Charmed because they use their powers for good and to help people like I do. 

As most of you all know that I was diagnosed at 2 in a half with having Cri Du Chat.  When I started reaching out to families about five years ago,  I didn’t know what reaction I would get from families who had children more severe than me because I could do things on my own like reading, writing, riding my bike, cooking and speaking.  I soon realised that I could help the Cri Du Chat community with my knowledge and understanding what Cri Du Chat was all about.  Soon everyone knew who I was and I still am reaching out to families who need my support and help.  I won’t give up on my Cri Du Chat brothers and sisters.

I am a volunteer, a role model, someone who people can look up to and I bring light where there is darkness.  I am not the R word nor are my CDC brothers and sisters.  We deserve to be treated with RESPECT and understanding.  Words can be powerful and can hurt for a lifetime.  There are so many other cool words to use that people can choose from.  I don’t let my disability slow me down or rule my life and CDC doesn’t define who I am as a person.

I have a unique insight to what it is like living with CDC.  I am an inspiration to a lot of families but I am still someone despite my disability enjoys life and I have interests just like everyone else in the world.  I would like to share some with you, I like helping families on facebook to help them understand their child better.  I love playing scrabble with my Dad, love catching Pokemon on my gameboy, enjoy texting my friends and family, listening to music on my iPod. Love collecting elephants and also watching tv and reading books.  These are some of the things that I love doing because they are relaxing and peaceful to me.

Sometimes I feel guilty that I have a wonderful life and there are some things that my CDC brothers and sisters can’t do and that I can do.  I know that touch so many wonderful and shape so many lives  but when I look into my eyes of my CDC brothers and sisters I see how much joy they get from the simple things in their lives.  I am a voice for them the ones who can’t speak for themselves and I give HOPE to those families who need it.  I may walk with a limp because of my hip but my brain still works.

I have reached out and helped over 800 families through facebook over the last four years.  I want to thank everyone who has believed in me.  Cri Du Chat has taught me so many things like when to let go of things that I have no control over, Cri Du Chat has made me strong and made me fight for my CDC brothers and sisters.  Cri Du Chat has also made me some excellent friends for life.

Wednesday, 7 May 2014

Cri Du Chat Awareness Week.

You all have heard it the high pitch cry of a cat but it isn’t a cat.  It is a newborn baby crying who has just been diagnosed with Cri Du Chat or Cry of the Cat and you are feeling scared and you feel like are the only one out there facing uncertain future alone.  You don’t know where to turn to so you begin your search on the internet searching through every website with Cri Du Chat in the title and you stumble across some out dated piece of information and then you start to panic about the future for you and your child.

It has happened to a lot of parents that I know of and I have talked to hundreds of parents over the years.  This is why we need a week to inform the public, doctors, nurses, teachers and the list goes on, that the information that the doctors and nurses give new parents is out to date.  Cri Du Chat is one of the most common deletion syndromes but yet we are so rare because the doctors don’t know a lot about Cri Du Chat so we become experts and try and teach the world about our amazing children and everything that they CAN do and not what they can’t do.

For this awareness week a parent suggested that we all wear stripy socks one long and one short to represent the deletion from chromosome 5 should be and overall the support has been just amazing from all around the world. On Facebook I have been finding 7 quotes one for each day of the week and I am up to day 5 and I have had over 200 people like my statuses so far.  They maybe the same people who like my statuses each time that I post one.  I believe in my CDC brothers and sisters and what they can achieve.

Monday, 24 March 2014

13.1 part 2

I am missing 13.1 of my 5P arm.  To most people the number 13 is unluckily but to me it is luckily because I don’t have my cells all affected with 13.1 deletion.  Even though some of my cells have the wonky chromosome I still have Cri Du Chat and that is never going to change even though some of my good cells will eventually replace some of my bad cells throughout my body.  I have my interests like collecting elephants and collecting Pokemon on my gameboy (I have several Pokemon games) and I also read a lot.  The reason why I love collecting elephants is because they are luckily in some cultures and elephants are my favourite animals and because they represent wisdom, courage and strength which I show in my everyday life.  I may not be intelligent to go to university but I show intelligence in other ways and sometimes I think I am wise beyond my years when I come up with my quotes and sometimes I don’t know how I come up with my quotes.  I show courage in everyday life by getting up each morning and facing the day not knowing what the outcome of the day might bring.  I show strength by helping other families who children have Cri Du Chat and for people to believe in me in what I am doing.   I know that 13.1 is just a number and it isn’t going to stop me from living my life and marrying the man of my dreams.

Tuesday, 18 March 2014

How I explain CDC to someone

I am me and I can’t change the fact that I have CDC or that I am a mosaic but I help a lot of people to understand yes that I do have CDC but I am trying to make a difference and try and get the word out.  So how do I explain to someone that I have CDC and it depends on who is asking and I what I tell them.

I start with my name because I am a human first before I tell them that I have a rare genetic syndrome.  Next I tell them that I have Cri Du Chat or Cry of the Cat or 5P- or CDC for short.  I was brought up using Cri Du Chat not 5P-.  I know in America that some parents use 5P- to explain my syndrome and that is fine by me because it is called by either name.

Next I tell them that Cri Du Chat affects my 5th chromosome and that I am missing quite a large chunk of my 5P arm and that my deletion is 13.1 and then I tell them that is where the 5P- comes from explaining the deletion and what chromosome it is located on.

Next I tell them that I am a mosaic and then I explain what a mosaic is and what percent of my blood cells are affected and then I tell them I don’t know the rest of my percentages throughout my body. 

Next I tell them how CDC affects me I explain to them that I have a slight intellectual disability, my concentration isn’t that great and I can only concentrate for certain amount of time but I need a break and do something else.  I explain about my hip how I walk with a limp and how CDC affects my speech also.  I also tell them that I get sensory overdrive if I am in a crowd of lots of people and then explain what sensory overdrive is to them also. 

I ask them if they have any questions that they may have and if they don’t we end the conversion there.  If they do I answer their questions and tell them that Google is out to date with the old information and that they need to go and look at the correct information like the support groups around the world. 

In conclusion my conversions that I have with people last for about five minutes because I have given them my story in a short amount of time and I know what information that people are looking for because I have explained it to so many people and I will always put it in my own words.

Tuesday, 4 March 2014

The "R" word

The “R” word is hurtful and we don’t need to use it in modern society.  Some people think they can use it without thinking about the consequences what they are saying.  When people use that word it hurts more people than they realise.  The “R” word is an old fashioned word meaning slow, dumb and some other nasty horrible words that we don’t need in society today and there are better words than the “R” word like another “R” word called respect.  I respect my CDC brothers and sisters because they struggle in everyday life but they never give up even through the tough times like that they can’t do something and then with heaps of practice they finally achieve their goals in their own time.  Another acceptable term when describing someone with a disability is intellectual disability it is more accepted than the “R” word.  I have been called the “R” word when I was little by other children and it felt wrong and made me feel sad that I was different from everyone else but now I can see why I am different and I am trying to change the world and make it better for my CDC brothers and sisters so that they can follow in my footsteps and leave an imprint on the world forever.  In conclusion the “R” word isn’t accepted in society anymore so why use the “R” word when they are plenty of other good words out there to describe someone who has a disability and maybe who is a little different from you.